Genetic Neuromuscular Diseases in Libya.

Abstract

Dear Editor:
Whereas in previous decades the landscape for certain disorders such as cancer and genetic diseases, in particular neuromuscular, was bleak, a glimmer of hope has now arisen. This glimmer is growing fast into a beam that promises to shine light over the coming decades. Genetic therapy has finally arrived.
I wish to shed light on the prospects in our location here in Libya: what has been done so far and what remains to be done. Our experience over the last 4 years will also be outlined. The reader will find that we have much to be proud of, and yet the challenges have been sometimes seemingly insurmountable.
The scientific committee for genetic neuromuscular diseases (NMDs) was instituted in Libya four years ago. (1) Members include adult and pediatric neurologists’ representatives from most of the main cities of Libya as well as legal, pharmacist, and administrative members. It is part of the Libyan Program for Neuromuscular Diseases, which includes the Patient Neuromuscular Society. Thus, Libya has made considerable progress in the promotion of patient advocacy for these conditions. The neurologist members of the scientific committee are the heads of subcommittees formed in the city or city location to which they belong. Thus, a network covering all of Libya has been formed. The main concept overriding this organization is teamwork. Patients attend the subcommittee clinics to be assessed, tested genetically, counselled, treated, and followed up. Accurate statistics can be obtained regarding these diseases’ incidence and prevalence in Libya. A national patient database is now the next aim.